By Holly Bortfeld
DSM-5 Draft Criteria Open for Public Comment
Mental health diagnostic manual available for final online comment period
The DSM – Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association – is like a giant catalog of diagnoses. It’s the “bible” that lists the criteria for each disorder.
DSM-IV-TR is the current version in use now. Today it includes PDD-NOS, Asperger’s, and Autism. The most notable diagnostic criteria difference between kids with Asperger’s and Autism is that there was no marked delay in language early in life. I know a lot of kids with Asperger’s diagnoses that did have a marked delay. The criteria isn’t perfect, to be sure.
Asperger’s Syndrome does have diagnostic differences from “autism” but in 2013, the new version – DSM-5 will remove all the variations and leaving us with just one diagnosis: Autism Spectrum Disorder.
In recent studies, these proposed changes are said to disqualify 25-65% of people with an ASD diagnosis. Make no mistake, this is the biggest attack on our community to date. What will you do if YOUR child loses their diagnosis, and therefore services? You need to ACT TODAY.
The DSM5 Committee Press release says:
DSM-5 Draft Criteria Open for Final Public Comment May 2nd through June 15th, 2012. This commenting period marks the third and final time DSM-5 draft criteria will be available for your feedback. Following this period the site will remain viewable with the draft proposals until DSM-5’s publication.” Please note: You must register before you can comment, then you have to go to the specific “disorder” you want to enter your comment on (Autism Spectrum Disorder).
http://www.tacanow.org/news/dsm5-last-call-to-action
We strongly urge ALL OF YOU to go and comment about the proposed changes – this is your ONLY chance to say your peace.
Read more at http://www.tacanow.org/family-resources/autism-vs-aspergers-syndrome-diagnosis/
http://www.tacanow.org/blog/diagnostic-criteria-changes-what-your-family-needs-to-know/
Moving Autism Forward by Team TACA 
Here is my comment written to the APA:
Comments on Proposed DSM 5
Changes in Autism Designation
First of all, I would like to point to my background in working with individuals with autism spectrum disorders (ASD). I am the board president of Starry Night, a non-profit corporation.
SN recently conducted a two-year pilot program with Central Michigan University. This program is known as Max’s Place at CMU. MPCMU targeted an underserved portion
of the autism spectrum, known as Asperger Syndrome. The goal was to promote social and emotional growth through the arts as a hands-on experience in a two-week summer program. MPCMU was conducted as a joint venture of Starry Night, CMU and VSA of Michigan.
Because youth with Asperger Syndrome (AS) currently receive little to no support in school and are often severely bullied there and then end up with post traumatic stress disorder, the SN Board felt that it would be important to conduct MPCMU as a program specifically tailored to them. MPCMU contracted with an independent evaluator, a psychologist specializing in ASD, Fred Johnson, to evaluate its pilot program. Dr. Johnson was initially highly skeptical of the value to social and emotional growth in a two-week only program. Following MPCMU’s completion he admitted he was very wrong. In Dr. Johnson’s summarizing report he concluded that his “numbers indicated an unheard of 27% overall gain in social and emotional growth by Max’s Place participants, youth with the Asperger Syndrome form of autism.”
With the success of the participants of MPCMU in mind, the SN Board is planning to build upon the foundational pilot and establish it as a permanent and year-round program. In 2011, SN purchased a house to that end that will serve as a respite, referral and resource service for MPCMU families. These are families affected by Asperger Syndrome and PDD-NOS. In my capacity as president of Starry Night, I have seen the incredible suffering of our MPCMU participants, youth with Asperger Syndrome and PDD-NOS. The trauma as a result of bullying in the schools leads to isolating behaviors and a higher rate of inability to complete school, and subsequently a critical lowering of self-esteem. The lack of critical services in the schools, only adds to the widely reported extra-academic difficulties in youth with AS. With this background of challenges for people with AS/PDD-NOS in mind, the Starry Night Board of Directors is against the current proposed revisions to ASD in the DSM V, which would with a few critical keystrokes eliminate AS/PDD-NOS as an autism spectrum disorder.
These proposed DSM V changes would eliminate many, many services that do currently exist for youth with AS/PDD-NOS outside of school, if they have decent insurance. Also, the proposed changes would further stigmatize this group due to the sheer fact that many currently identified as AS/PDD-NOS would then be relegated to the diagnostic category of conduct disorders, which carries a higher rate of judicial involvement than does the autism designation.
Through Starry Night’s highly successful MPCMU I have seen that progressive and positive interventions are possible for youth with AS/PDD-NOS. We need to step forward and embrace these interventions by allowing the categories of AS/PDD-NOS to remain as they are in the current DSM. Please don’t slide an entire subset of youth into a murky form of diagnostic dark ages. With proper diagnosis and tailored interventions, youth currently identified with AS/PDD-NOS can and will become productive members of society.
Please do not eliminate the autism designation for individuals who are considered mild on the autism spectrum, for there is nothing mild about the comorbidities associated with the milder forms of autism, such as: school failure, paralyzing anxiety, isolating behaviors, low self-esteem and PTSD.
Thank you for considering my viewpoint in developing the DSM 5 in its final version.
I’ve got Asperger’s syndrome and believe that its existing seperate status should be maintained. I’m convinced that Asperger’s and autism are not related at all, or are possibly opposite extremes of one psychological trait.
It’s very easy for me to tell the two apart: people like myself with Asperger’s syndrome want to fully participate in society but we’re rubbish at socialising and so frequently live isolated lives, whereas people with autism just want to remain in their own private little worlds.
Hi there
The problem with DSM 5 is that it really leaves Aspergers in “no mans land.” Doesn’t help or classify you separately.
At TACA we want those who need help to have the ability to receive it based on their unique needs.
All my best, Lisa
I couldn’t find where to post on the website, so I used the email address. dsm5@psych.org If it begins working again, could you let us know? I would like to post again. My draft is below. If there is a more effective template TACA has written, I would like to see if to send as well. Thanks.
Hello,
I am writing out of concern for the changes to ASD diagnosis, and am extremely worried children on the higher end of the spectrum will be left behind if these changes are made. I understand that Asperger’s Syndrome does have diagnostic differences from “autism” but am very concerned that in 2013, the new version – DSM-5 will remove all the variations and leaving us with just one diagnosis: Autism Spectrum Disorder. My son already is not receiving all the help he needs, because he is high functioning, and because some of his disabilities are too rare to qualify for services. If DSM-5 is interpreted in the way I am afraid it will, then he will receive zero help.
My son has a chance to have an independent life, if he gets the help he needs during childhood, but if this goes the way we think it will, then he will be a burden on the state after we die.
Thank you for hearing our concerns.
Sincerely,
Haverly Horton
My son has been diagnosed with PDD-NOS and I can tell you if it weren’t for all the modifications he was afforded because of his Autism Disorder there is no telling where he would be today. My son is 15 he is verbal but is socially dysfunctional. He constantly stims and it is hard for him to communicate exactly what his wants or needs are. I ask you what is going to happen to children like my son if he will not be afforded the services that he most certainly needs if the dx that he has had since he was 3 is now no longer in existence. I am very much afraid he will regress and then what? I am just not understanding how you can have a diagnosis today and then decide it does not exist. Really? This is just not acceptable to me or to my son. I just do not understand how this can happen? My son is higher functioning than most children but guess what he is still lower functioning than your typical non classified children. Where does this leave him in Limbo again? As with many Autistic children who are dx there are many levels of functioning too broad to say one is better than the other. How can you just pick and weed out this dx. Not fair at all and it really needs to be addressed before we have an epidemic of children in Limbo!
Maria McQuay
New Jersey